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Recovery Journey For Caregivers

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Tristan, a 4th year university student, aspires to be an occupational therapist.  He tries to balance his academic responsibilities with providing remote care for his frail 94-year-old grandmother who lives 2 hours away.

A new immigrant woman, Shanti, who is unfamiliar with the Canadian health and social system, struggles to care for her father who is “losing his mind”.

Drew, a 58-year-old man, juggles between working from home and caring for his father with mild cognitive impairment.

Greta, an older woman whose spouse is “turning into a different person” as his dementia worsen, feels isolated and that her life is spinning out of control.

It’s not news that the number of seniors living with dementia in Canada is rising steadily as our population ages.  According to the Canadian Institute for Health Information (CIHI)1, about 61% of Canadians living with dementia live at home rather than in long-term care institutions, and these persons require support to safely age in place.

As a result, we often encounter real-life examples of the above characters in our line of work in mental health. 

Indeed, many family caregivers often bear the responsibility of caring for their loved ones without the benefit of formal training regarding the condition and on how to provide proper care, nor about how to care for themselves while caring for the person living with dementia (PWD).  Subsequently, they face disproportionate vulnerability to poor physical, mental, and social outcomes.  CIHI1 reported that almost half (45%) of those caring for seniors with dementia exhibit symptoms of caregiver distress, such as anger or depression. Caregivers are also at 600% higher risk of developing dementia themselves2.

As a researcher who is curious and passionate about caregivers’ well-being, I have been humbled by the stories told by our dementia caregivers.  Many a time, caregivers expressed how caregiving is a “thankless job”, and that they feel isolated in their role.  Alzheimer Society of Canada reported that 87% of caregivers wish that more people understood the realities of caring for someone with dementia3. “Loss of self” or “loss of identity” often comes about as a result of the all-consuming nature of the caregiver role, and was found to be more common among spouses, females, and younger caregivers4. Social isolation – limited social contact and lack of social roles outside that of caregiving – was also found to be related to greater loss of self, and a higher risk for depressive symptoms.

Ontario Shores was one of the first organizations to sign the Mental Health Commission of Canada’s Declaration of Commitment to Recovery. This commitment to advancing recovery-oriented practices and adopting the recovery philosophy is evident in all areas of practice across our hospital.  Through the Recovery College, individuals with lived experience are invited to Recovery Courses representing five domains than enhance personal recovery s: Learning and Understanding​, Skill Development​, Vocational, Leisure, Health and Wellness and Self-Discovery and Identifying Strengths.

There is an opportunity to offer our dementia caregivers the same model of care through recovery-oriented education and skill development.  Looking at the CHIME Framework – Connection, Hope, Identity, Meaning and Empowerment – for personal recovery, I can’t help but be excited about the idea of co-designing workshops with dementia caregivers that would provide a safe space for them to be empowered in re-establishing their self-identity, and to meaningfully engage and support others who have similar lived experience in their respective recovery journeys.  I see great opportunity in leveraging the recovery college model at Ontario Shores to blend together professional and lived experience to support our wonderful caregivers.

This year, we celebrated National Caregiver Day on April 5. With this blogpost, I wish to extend my most heartfelt thank you to all caregivers.  We see you, we acknowledge your experience, and we celebrate you for who you are. 

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